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#1 | ||
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New Member
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I have just been diagnosed with MMN myself. I'm only 23 years old and I've been having weakness in my left leg. I can't get up, walk, stand for long periods or climb stairs. I've found out that its now in both legs and both arms. I was told that i had a viral infection and my white blood cells attacked the virus then saw my nerves as a threat and attacked them as well. I also suffer with drop foot syndrome. I'm very miserable and my knees keep giving out on me. When I fall i can't get myself up someone has to literally pick me up. I was suppose to go see another Dr. to get a second opinion,but they can't fit me in. I believe that i'm having the iv treatment done thursday. I'm very scared and nervous. I want to be cured so i can pick up my son and run after him. Can anyone tell me what i should expect from the treatment?
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#2 | ||
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New Member
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I'm sorry to hear that you are going through this. But let me tell you something that has kept me going each and everyday. That's keeping your spirits up and having a good attitude on the situation that's going on. I know it's hard, I know. I'm truly sorry we're all going through this horrible disorder. As for the treatments go. They are great. they've worked for me very well. I'm also on chemotherapy treatment called Rituximab. This did not make me sick at all,or lose any hair of that matter. I've only had one treatment of that so far. I've been diagnosed with this for almost 2 years now,so I know exactly what you are going through. Best of luck. Will keep you and your family in my prayers.
Steven Quote:
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
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#3 | ||
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New Member
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Hey everyone -
Just stumbled across this site during my monthly "Let's look up online if they've discovered anything new about MMN" search. ![]() I'm currently 29 years old but started experiencing weakness in my hands when I was 26. Over the course of that first year of symptoms, I got to the point where I suffered from complete wrist drop in both hands. Being a 4th grade teacher, this was tough for me. I dropped pencils and markers in front of my kids, couldn't type or write on the board without holding one of my wrists up, and I dreaded having to shake parents' hands due to the embarrassment of my condition. My lifelong hobbies of playing piano and volleyball were stripped from me - and took normal happy-go-lucky personality with it. It was the toughest year of my life. ![]() After trying to fix my 'strength problems' with physical therapy, I was told I needed surgery to remove discs from my spine that were believed to be putting pressure on my spine, resulting in my weakness. Two removed discs, a titanium plate, and six screws later to do the fusing of my new cadaver discs, my surgery was over and my strength continued to deteriorate. All that, .....for nothing. Believe it or not, it was my MOM (in an attempt to try to help her sad, scared daughter) who happened to find Multifocal Motor Neuropathy online. I asked my doctor about it, and after several tests, he agreed it was what I had. I've been seeing a new neurologist and he too diagnosed me with MMN. I've been getting IVig for the past year and it has worked wonders. Unfortunately for me, I have to go once a week to get treatments. I receive my treatments in Ambulatory at our local hospital, and my insurance covers 100%. I feel truly blessed. I had a check up appt. with my neurologist today who told me about Rituximab. He said it was a newer IVig medicine that was still being researched. He said it may be something I want to consider down the road, after it's been researched more, seeing as how I will probably need treatments for the rest of my life. Those of you who are on Rituximab - do you experience any side effects? Can you truly last 10 weeks before you need another treatment of it? I find additional strength from amazing friends and family and sites like this that make me realize I'm not the only one who suffers from this. I am also thankful there IS a treatment, despite the fact that I have to go every week to get it. The more we talk about this, the more attention it will get, and hopefully they'll find a permanent cure! Hang in there, folks. We can do this!! |
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"Thanks for this!" says: | (Broken Wings) (06-08-2009), aneczka (11-12-2014) |
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#4 | ||
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New Member
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I'm so glad to find a forum with others who have MMN. I have been searching since I was diagnosed in Nov. 2008. I had been suffering and searching for a diagnosis for 3 years. By the time I received IVig treatment, I had lost most strength in my hands and had wrist drop. My muscles had begun to atrophy. Luckily, I had already found a medicine for the jerking, but I still had muscle cramping and mild tremors. I also have some problems with my feet, but its not too bad.
The IVig therapy worked miracles for me. I was vastly better in three weeks. I had three days in a row and then once a week for 2 months. I had a setback so I had another 3 days in a row recently. I also have it every other week. The new doc who made the diagnosis also recently started me on azathioprine. He said it would take up to 6 months to work though. I hope that we can all communicate about the struggles of this problem. *edit* Last edited by Koala77; 04-26-2009 at 07:00 PM. Reason: As per NT guidelines |
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
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#5 | ||
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New Member
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Was diagnosed with MMN in Jan. 2009 and started ROUND 1 of IVIG in February (5 weeks: 5 days, 2 days, 2 days, 1 day and final week 1 day). Noticed improvement in left leg after 4th week ... meaning that I could walk without limping, but still couldn't walk fast/run.
After about 2-3 weeks, the "high" wore off and needed to start back on IVIG. After a prolonged battle with my insurance company, started ROUND 2 of IVIG mid-April (2x per week for 4 weeks). My leg has improved slightly, but nothing like during Round 1. My doctor wants to start me back up on IVIG treatments again ASAP, but need to deal with insurance approval again ~ crazy and infuriating!!! I'm 40 yrs old and prior to all this (just over a year ago) led a very active lifestyle (hiking, skiing, running, playing soccer with my boys). I find myself wondering if the doctor has the right diagnosis? With such a rare disease is enough known about the IVIG frequency or is it just trial and error? Am I missing out on some treatment we should be doing now before nerve damage is done that can't be repaired? What more can be done aside from IVIG? Diet changes? If I limp at 40 what will I be doing at 60 yrs old??? Well, thanks for "listening" to me vent. It's good to have a place to go to do this and not feel so alone. Appreciate hearing all your stories and what's working for you. |
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
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#6 | ||
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New Member
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Quote:
Additionally I thought it would be helpful to let you know that there is research going on in Italy with MMN that seems to be noteworthy. Also John Hopkins does research as well. The newest treatment I have heard for it is Rituxiamb (that might not be spelled right) a monoclonal antibody that attacks only certain antibodies that are attacking the peripheral nerve cells. Check it out. Best of luck to all and I am very happy I found a forum for this thing because with 1 in 100,000 there aren't too many people I can turn to to relate about my symptoms. |
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
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#7 | ||
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New Member
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
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#8 | ||
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New Member
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My doctors also thought I originally had CIDP. They also did a spinal tap on me and it came back normal. Then they found out about MMN and felt it was a better fit for me. Some IVig treatments work quickly, others take longer. The second time I had to get my set of five treatments, it took nearly a week before I noticed any difference, while, the first time I had the set of five, I noticed the change quickly. Don't lose hope, just be patient!
My doctors also have mentioned Rituximab. |
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
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#9 | ||
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New Member
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I have had MMN for 8 years and have had, still having, IVIG. Have had Ritixumab and Cyclophosphamide . All of these treatments have worked but the improvements have not lasted, and my left arm (where I am affected) is slowly getting weaker and more my fingers are curled and my wrist droops.
I now wonder if there might be another way of treating this problem, diet, natural foods, vitamins etc. At 63 years of age I would like to slow this progression down if possible. Has anyone gone down this path and if so what progress have you made. |
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#10 | ||
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Junior Member
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I just spent the last week ay Mayo in MN getting poked and prodded. They concur with the MMN conclusion, though the doc did say they can't be definitive without observing for months or years. He's recommending doubling the IVIg dose I was getting, which I regard as a positive result: My doc at home has no experience with MMN (despite working at the Univ of Utah, not a small population), where the Mayo sees as many MMN cases as anybody else, I believe. My Utah doc was considering plasmaphoresis or cyclophosmamide next, both of which sound pretty scary.
As for how people respond to IVIg, Dr. Jones (Mayo) said you don't generally get reversal of current damage--what is hoped for is to stop the progression of the disease. I could live with that--so far having lost extension of 3 fingers on my left hand, have some weakness, etc. Thankfully I'm right-handed. It's kind of discouraging to have so many (well, relatively) responders here say that the IVIg didn't help much. I also had a lessening of fasciculations and cramps with the 5 months of treatment just concluded. Can anybody else share their experience? Maybe this forum is self-limiting to patients still seeking answers, and those who do experience successful results tend to not follow the forum? |
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